January 29, 2012
January 25, 2012
Rolling, Rolling, Rolling
I was doing some work at my desk this morning when I heard a tapping on the floor at my feet. Charlie, who had been lying on the floor about six feet from the doorway, had rolled multiple times and reversed head to toe to make it to the door. He was only stopped by the step up onto the hardwood floor. Otherwise, he would have probably made it to Louisiana.
January 22, 2012
Therapy Evaluation
Charlie spent Saturday afternoon at Our Children's House at Baylor having a 2-hour physical assessment. The woman we met is named Monica and she is an occupational therapist. Charlie fell in love and very much enjoyed playing and swinging the time away. Monica said that for a child with Charlie's prognosis, he is doing quite well and that the physical therapy we've been receiving from Lori (via ECI) is obviously of high quality. And she also recommended weekly occupational therapy appointments for Charlie. Next, we have to get authorization from our insurance company and we'll be off to the races! Here are some photos from our session...
And of course, all of this is happening because Charlie has been chosen as one of the 2012 beneficiaries of Kenna's Kids - a nonprofit organization that assists children experiencing medical challenges at an early age. As a show of our gratitude, Jack and I made this little thank you film for Kenna's Kids.
And of course, all of this is happening because Charlie has been chosen as one of the 2012 beneficiaries of Kenna's Kids - a nonprofit organization that assists children experiencing medical challenges at an early age. As a show of our gratitude, Jack and I made this little thank you film for Kenna's Kids.
January 20, 2012
MRI Day
Charlie, Walker and I were out of the house at 5:40am today. Walker stayed with our amazing neighbors and Charlie and I headed south to Children's Medical for our 6am appointment. When we arrived, the doors were locked and two other families were sitting out in the cold watching the early morning darkness dissipate. I had a feeling we'd been sent to the wrong door. So after a small goose chase, we found the proper door and got down to business.
Charlie was amazing. He was smiley and calm and had no reason to be. He had not had any solid food since 6pm the previous night. After a quick hazing with the insurance police ("Admitting") where we signed more papers than I did at the purchase of my home, we were called into the prep room. I signed more paperwork and a nurse, who seemed to be in a big rush, took me through a series of questions. Another nurse appeared and helped me put Charlie in his gown and scrubs. We met the very nice anesthesiologist, who made me sign more paper work. And poof, Charlie was gone. They swept him away and sent me to the waiting room with a cup of terrible coffee and a "Parenting" magazine.
After about an hour, I was called into his recovery room. He wasn't quite awake and his respirations per minute were pretty low. He was congested, lips puffy and chapped. But he seemed peaceful. Then the same nurse, who still seemed to be in a rush, gave him some oxygen which helped his respirations. She started pushing his head around and shaking his arms and saying "Wake up baby. Time to go home." Weird, right? I'm sure shes a great nurse, but her bedside manner left much to be desired. He still wasn't awake. She pulled out a bottle of Pedialyte and put the nipple in his mouth. I pushed her hand out of the way and said, "He can't handle that - he'll aspirate the fluid if he doesn't know its in his mouth." She put down the bottle and said, "Then please help wake him up." The bottle had dripped fluid into his mouth. He started sputtering a bit and coughing. I rolled him onto his side and the coughing subsided. I rubbed his back and he opened his eyes. It's odd because usually the nurses who've helped Charlie are angel people - for the past 18 months we haven't had one bad nurse experience. I could tell that she felt rushed by her colleagues. My guess is that she was just having one of those mornings.
Charlie was out of sorts for the first hour after waking. Lots of crying and chewing of fists. He had a little clear fluid followed by some milk. We were home to pick up Walker by 11:30am. All in all, it was a rough morning. But Charlie was a trooper and I felt grateful to get it done. We'll receive some info about the brain scan in the coming weeks as well as meet with our new neurologist, Dr. Dowling. Charlie is so happy to be home. When we pulled up to the house, I looked back and saw that Charlie had chewed off the band-aid and cotton ball covering his IV site. He had white fuzz, speckled with blood on either side of his mouth. I guess he was hungry. Here is a video of his first taste of food today at noon. Sweet applesauce! There's nothing better.
I think Walker was tuckered out from rising early and playing hard with the neighbor boy. I gave him some lunch and a glass of water and put him in front of the TV while I fed Charlie. When I returned, I found him sleeping on the sofa.
Charlie was amazing. He was smiley and calm and had no reason to be. He had not had any solid food since 6pm the previous night. After a quick hazing with the insurance police ("Admitting") where we signed more papers than I did at the purchase of my home, we were called into the prep room. I signed more paperwork and a nurse, who seemed to be in a big rush, took me through a series of questions. Another nurse appeared and helped me put Charlie in his gown and scrubs. We met the very nice anesthesiologist, who made me sign more paper work. And poof, Charlie was gone. They swept him away and sent me to the waiting room with a cup of terrible coffee and a "Parenting" magazine.
Charlie had a tooth come in last night - one of the ridged back teeth.
Great timing, eh? Here he is chewing on it.
After about an hour, I was called into his recovery room. He wasn't quite awake and his respirations per minute were pretty low. He was congested, lips puffy and chapped. But he seemed peaceful. Then the same nurse, who still seemed to be in a rush, gave him some oxygen which helped his respirations. She started pushing his head around and shaking his arms and saying "Wake up baby. Time to go home." Weird, right? I'm sure shes a great nurse, but her bedside manner left much to be desired. He still wasn't awake. She pulled out a bottle of Pedialyte and put the nipple in his mouth. I pushed her hand out of the way and said, "He can't handle that - he'll aspirate the fluid if he doesn't know its in his mouth." She put down the bottle and said, "Then please help wake him up." The bottle had dripped fluid into his mouth. He started sputtering a bit and coughing. I rolled him onto his side and the coughing subsided. I rubbed his back and he opened his eyes. It's odd because usually the nurses who've helped Charlie are angel people - for the past 18 months we haven't had one bad nurse experience. I could tell that she felt rushed by her colleagues. My guess is that she was just having one of those mornings.
Charlie was out of sorts for the first hour after waking. Lots of crying and chewing of fists. He had a little clear fluid followed by some milk. We were home to pick up Walker by 11:30am. All in all, it was a rough morning. But Charlie was a trooper and I felt grateful to get it done. We'll receive some info about the brain scan in the coming weeks as well as meet with our new neurologist, Dr. Dowling. Charlie is so happy to be home. When we pulled up to the house, I looked back and saw that Charlie had chewed off the band-aid and cotton ball covering his IV site. He had white fuzz, speckled with blood on either side of his mouth. I guess he was hungry. Here is a video of his first taste of food today at noon. Sweet applesauce! There's nothing better.
I think Walker was tuckered out from rising early and playing hard with the neighbor boy. I gave him some lunch and a glass of water and put him in front of the TV while I fed Charlie. When I returned, I found him sleeping on the sofa.
January 19, 2012
O is for Owl and L is for Love
Every week at preschool, Walker studies a new letter. This week was the letter O. He learned about Opposites and Ostriches and Oxygen and Owls. Today when I picked him up from school he was carrying his latest art project. Isn't it wonderful?
Here are two of the conversations
I've had with Walker over the past two days:
Walker: You know, Mom, I like some people better than others.
Mama: Well, that's pretty normal to prefer some people to others.
Walker: You know who I like best of all?
Mama: No, who?
Walker: Harper Ann.
Mama: Your friend from school? Why do you like her best?
Walker: Well first, she's nice.
Mama: Yeah, she's a really nice girl.
Walker: And she's very pretty.
Mama: Yes, she's pretty too.
Walker: And I don't just like her. I love her.
Mama: It's good to love people.
(pause)
Walker: And Mom? I'm getting kinda tired of seeing her only at school.
Mama: Oh really?
Walker: I would prefer to see her at her home.
Mama: You'd like a play date with Harper Ann?
Walker: Yes. We will play "House".
Mama: I see.
Walker: So why don't you call her mom.
Then in the car on the way to school...
Walker: You know what Mom?
Mama: What?
Walker: 2 times 3 is 6
Mama: Wow, Walker! Where did you learn that?
Walker: At school.
Mama: Are they teaching you the times tables?
Walker: I don't know about tables. We're learning multiplication.
Mama: Ah ha. I see. Do you know what 2 times 4 is?
(In the rear view mirror I see Walker hold up four fingers with one hand. Then he holds up his other hand with four fingers up. Then he counts all the fingers quietly. After a moment...)
Walker: Eight.
Mama: Walker! That is amazing! You're amazing!
Walker: And you know, 2 times 9 is 40.
Growing up fast.
January 18, 2012
Feeling Better... a little at least
The boys are feeling better. Mama has no voice today so Walker is taking FULL advantage of my whispery, scratchy sound. When I'm talking to him, he walks away and says in a sing songy voice, "I can't hear you..." In response, I've been overly grabby today. Ah well. I'm glad they feel better and I'm happy to report that we have had no fevers today!
Here are a few shots of Charlie on the floor in his bedroom.
A little snotty, but still happy.
There was a point today when Walker was being particularly whiny and sassy. I told him that he needed to help out and stop whining if he wanted to watch any TV. A few moments later he came down the hall carrying Charlie's humidifier - it was full of water. He said, "Taking care of babies is hard work. Will this make Charlie more comfortable?" Needless to say, he got his TV show.
Later, Walker lined up our kitchen chairs for a fireworks show...
but Charlie wasn't really in the mood. Leave it to Walker to cheer him up.
but Charlie wasn't really in the mood. Leave it to Walker to cheer him up.
Subscribe to:
Posts (Atom)